ross • May 30, 2023
HCMA travels to policy conference

Last week, I had the privilege to moderate a panel, “Novel Nursing: Helping Patients Adapt to Medical Innovation,” on the challenges and opportunities created by Myosin Inhibitors in Hypertrophic Cardiomyopathy at the PACH Cardiovascular Health Policy Summit in Washington DC. I was joined by Sue Philpott, RN, BSN – Corewell Health in Grand Rapids, MI, and Amy Beatty Marzolf, CRNP, MSN – Hospital of the University of Pennsylvania, who are impressive and articulate.   

At the summit, I also met Scott Barrokas, a member of the HCMA Legislative Committee, who attended the Summit to learn more about patient advocacy in a legislative setting through sharing experiences and stories.  It was a great experience as we can all learn to improve patient care and outcomes by sharing our experiences and providing a voice to patient needs. As a member and employee of the  Hypertrophic Cardiomyopathy Association , I hear these stories daily, but many of our legislators don’t, and sharing is caring.  


For those of you who would like to watch the Summit, it is available online:  https://youtu.be/Ugw7qEzv1R0

HCMA Blog

By Lisa Salberg July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
By Sabrina Cuddy July 3, 2025
By Erica Friedman June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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